Due to the current COVID-19 pandemic Genetic Alliance UK has made the decision to close our offices and work remotely. If you have a query, please email [email protected] as our phone lines are not being monitored. If you have a press enquiry please ring our press officer on 07739 286397.
To find out more about our work, you can reach us by email, phone, or post, or send a message using the form below. If you are looking for more information about a particular condition, one of our members might be able to help. You can find our member contact information on our members page.
Full membership of Genetic Alliance UK is for all voluntary organisations concerned with genetic disorders. This enables us to represent a wide range of people affected by genetic conditions and campaign for the broad issues which affect all of our members. There are lots of benefits to membership, please visit our join page to fill in an application form. Membership fees are decided by the member organisation’s level of income. If you have any queries about how to renew your membership please contact our membership team.
Our research team specialises in studying the experiences of patients and families affected by genetic conditions, including undiagnosed conditions. If you would like to contact us to ask about a research project, or have other questions about research, then please contact us at [email protected].
RARE DISEASE UK
Rare Disease UK (RDUK) is a multi-stakeholder campaign run by Genetic Alliance UK, working with the rare disease community and the UK’s health departments to effectively implement the UK Strategy for Rare Diseases. RDUK provides a united voice for the rare disease community by capturing the experiences of patients and families. The campaign works with its supporters to raise the profile of rare diseases across the UK. RDUK seeks to bring about lasting change offering better health and quality of life for individuals and families affected by rare diseases. To find out more, or to get involved, you can visit the RDUK website.
SWAN UK (syndromes without a name) is the only dedicated support network available for families of children and young adults with undiagnosed genetic conditions in the UK and is run by Genetic Alliance UK. SWAN UK supports families in hospital and at home offering 24/7 access to support and information. SWAN UK holds regular events to bring families affected by undiagnosed conditions together. SWAN UK also helps to educate professionals about the issues faced by families affected by a syndrome without a name and help improve services so that all families receive high-quality coordinated care and appropriate testing/treatment. To find out more about SWAN UK here.
If you are a Genetic Alliance UK member, or a patient group wishing to be a member, you will receive our weekly newsletter just by joining up. If you have joined and are not receiving the newsletter please contact the membership team.
If you are not a patient group, or do not wish to become a member, you can sign up to our monthly newsletter by signing up at the bottom of any page on our website
Accessing appropriate insurance is a significant problem for many people affected by genetic conditions. We regularly receive helpline calls and emails from people affected by genetic conditions who are finding it difficult or impossible to access appropriate or affordable insurance cover. People are also uncertain about their rights and obligations in relation to disclosing details of genetic risks or family medical history. Our information in the living with a genetic condition section covers insurance and issues arising from genetic testing.
Your GP is the first point of call for enquiring about genetic testing in the NHS. Your GP will refer you to a regional genetics centre if they decide it is appropriate. You can search the UK Genetic Testing Network’s website to see if there are tests available through the NHS for your condition, and see the testing criteria for this. On our website you will find a list of regional genetics centres and information about genetic testing.
Patients tell us that one of the hardest things about having a rare genetic condition is that often their doctor may not have much information about the condition. At Genetic Alliance UK we are not medically trained, so cannot offer you medical advice about your condition, or the management and treatment of it. We can, however, point you in the direction of patient groups with more information, or help you search for medical literature alone. The section on our website about finding information should help with this.